Adults with ASD: The spectrum

Autism spectrum disorders are lifelong. 1 But the parents of the child with ASD who echoes every word or phrase he hears, who paces or flaps incessantly, or who intensely focuses on train schedules to the exclusion of all else may struggle to picture what their child will be like in adulthood. Will he learn to communicate with the outside world? Tone down his repetitive behaviors? Transform his special interest into a job skill?

Like parents, researchers want to know more about how autism characteristics show themselves in adults. Patterns of improvement in some areas of functioning are beginning to emerge. The core disabilities of ASD -- communication and social deficits and repetitive behaviors and interests -- can improve over the course of childhood and adolescence. In fact, higher-functioning ASD is sometimes deemed more a different way of approaching the world than a disability. 2 Although researchers caution that the symptoms rarely subside sufficiently to withdraw adult support services, 3 there is reason to hope for some improvement in day-to-day life.

"...[I]n many studies tracing progress from childhood to adulthood the overriding picture is one of improvement over time," writes United Kingdom researcher Patricia Howlin in her recent book, Autism and Asperger Syndrome: Preparing for Adulthood. 4 "The numbers of adults who show marked deterioration in all aspects of their functioning are, fortunately, very small and overall regression appears to be the exception, not the rule."

Some recent studies lend support to Howlin's statements. A 2007 U.S. study (Shattuck et al. 5) of 241 individuals with ASD, ages 10 to 52 years, found that symptoms improved overall during a period of 4.5 years. Researchers documented some degree of improvement in the following areas, considered the core symptoms defining autism: verbal communication, such as inappropriate questions or statements; social reciprocity, such as social smiling and direct eye gaze; and repetitive behaviors/interests, such as hand flapping. Maladaptive behaviors also associated with ASD, such as withdrawal or inattentive behavior, self-injury, and tantrums, tended to improve. Individuals with ASD paired with intellectual disability generally improved to some degree, but not as much as those without the combination of disabilities.

Overall, improvement in maladaptive behaviors continued -- or even accelerated -- well into midlife, according to the study. 6 Core symptoms of autism didn't show the same acceleration, but appeared to improve at a steady rate for individuals across age ranges, from adolescence throughout early and mid-adulthood. However, among the data that showed improvement, or at least consistency, in symptoms were data of a worsening over time of symptoms for some of the individuals with ASD. (See Table 1.) The researchers urged further study into factors that may have contributed to these results and possible interventions for adolescents and adults with ASD, as well as for their families.

Although behavioral problems, such as temper tantrums and self-injury, may improve in some individuals with autism, they still tend to be prevalent in these adults, according to a 2007 U.S. study on the well-being of mothers. 8 These behaviors can cause caretakers increased stress when, for example, a son or daughter reaches adult size. 9

A 2005 University of California, Los Angeles, (UCLA) study 10 of 48 individuals diagnosed with autism in early childhood found that although most still had autism years later, some of the symptoms showed improvement in adolescence. Improvements came in social and daily living skills, repetitive behaviors, and emotional responsiveness, such as offering comfort to a distressed parent.

This study noted that the adolescents with an IQ of at least 70 generally experienced more improvement in symptoms than those who were lower functioning. Cognitive- and language-based interventions targeted to the second group during childhood could perhaps lead to more positive changes in symptoms by adolescence, the researchers said. "Despite the severe limitations of high-functioning adolescents with autism, they still enjoy relatively more adaptive and social skills than low-functioning adolescents with autism." 11

Another possible area of intervention involves fostering social interaction between schoolchildren with autism and their peers, according to the study. More socially engaged children with ASD, including some with IQs lower than 70, tended to have better adaptive skills than those who were less socially engaged.

Several autistic behaviors in childhood, such as frequent repetition of words and phrases, may have become "toned down" or disappeared entirely by adulthood, according to another study, this one conducted in Sweden in 2007. 12 But, according to the findings, adults with autism may need continuing support due to persistent primary traits of autism, including impairments in communication and social interaction.

More than half of the participants in this study were rule oriented. In addition, most of these adults -- 93% -- continued to react abnormally to sensory stimuli; more than half of them disliked being held firmly and/or were indifferent to pain or temperature.

Some researchers have found a higher frequency of epilepsy in individuals with autism, ranging from 5% to just over 38.3%. 13 Seizure activity appears to peak in infancy or early childhood, before age 5 years, and then it peaks again after age 10 years. Also, intellectual disability is emerging as a possible risk factor for epilepsy. 14

Many individuals with ASD continue to need support throughout adulthood. The majority of individuals participating in the Shattuck study 15 remained significantly impaired and dependent on others for assistance with daily living. Rather than justifying a withdrawal of support for these adults, "...our findings should give greater impetus to extending interventions and services for this population across the life course." 16

Recent studies represent only the early steps of research into how autism affects adolescents and adults. According to the UCLA study 17 : "The next generation of longitudinal studies must examine continuity and change in autism in relation to varying environmental contexts.... It may be that certain environments foster more optimal development so that the picture drawn in the current study is unduly conservative. Although we can be heartened by the improvements in these children...future longitudinal studies will hopefully chart more dramatic gains."

Determining the factors that go into improving the quality of life for these adolescents and adults will be a key focus of future research. There is a glimmer of hope that -- though autism is generally lifelong -- some symptoms can improve. Now the question becomes: How can we maximize each individual's potential in the real world?

Studies show that quality of life for adolescents and adults is often lower than would be expected based on the degree of disability in any given individual. The National Autistic Society (NAS), of the United Kingdom, in 2008, reported that 63 percent of adults with autism living in the United Kingdom are not receiving the support they need. 18

In the United States, the Interactive Autism Network plans to collect similar, and more detailed, data from adults with ASD. These adults are working with IAN to develop a questionnaire that will include questions about their strengths, their needs, and their interests. The first questionnaire will include questions about research priorities; this information from adults with ASD will help determine the topics IAN places at the top of the list for future questionnaires. The data collected from IAN families and adults with ASD are always available to researchers to facilitate research into these areas.